Khartik Uppalapati, a 16-year-old junior at Oakton High School, has been awarded the Princeton Prize in Race Relations. Each year, the Ivy League school presents the honor to 25 high school students “who, through their volunteer activities, have undertaken significant efforts to advance racial equity and understanding in their schools or communities.” The prize includes a $2,500 cash award and an all-expenses-paid trip to Princeton’s Symposium on Race.
Founding the RareGen Alliance
Uppalapati has founded two organizations, but the one he’s being awarded for is the RareGen Alliance. Uppalapati started the organization in 2021, and it earned 501(c)(3) status last year.
The youth-led group is dedicated to fighting rare diseases through direct support and political advocacy. It organizes fundraisers and rare disease literacy programs, plus hosts networking events and patient support circles.
“There are a lot of organizations that focus on helping people with rare diseases gain access to better treatments or patient support or fund research for their specific disease. But a lot of these organizations don’t target the youth,” Uppalapati says. “They target researchers, they target corporations, they target doctors, they target the parents of patients. But they never actually talk to the youth who have diseases. And that’s really important, because the majority of people with rare diseases are under 25.”
A Personal Connection
He knows because he’s among them. When he was 12 years old, he began having infections and swelling in his legs. “It was really a medical mystery. And to this day, [health professionals] don’t know what caused either lymphedema or arteriovenous malformations, but they just know that I have them,” Uppalapati said. Lymphedema causes swelling due the accumulation of protein-rich fluid that the lymphatic system usually drains. Arteriovenous malformations are groups of blood vessels that form incorrectly and create irregular connections between arteries and veins.
After founding RareGen, Uppalapati connected at rare disease patient conferences with Viraj Kamath and Eeshan Dandamudi. Kamath, a fellow Oakton High student has a rare liver disease. Dandamudi, who has a rare form of asthma, attends Chantilly High School.
“I decided that this is not a single-person effort. I need to bring in as many youth leaders as possible who are involved in the rare disease space and have experience with it themselves,” Uppalapati says. “I talked about my plans, and they were looking for something similar too, because … they didn’t really have anywhere to express their needs or advocate for rare diseases.”
Currently, Uppalapati serves as president, Kamath as vice president and Dandamudi as director of research operations.
International Initiatives
Uppalapati says RareGen is particularly proud of is the Legislative Policy Action Forum. This expanded RareGen’s legislative advocacy from the state level to the international level. “What we’ve done through this initiative is we’ve authored around 79 different reports for both the EU and the [United Nations] Human Rights Council that they’ve read and used to shape legislation,” Uppalapati says. “There’s a lot of legislation being proposed in all of these international bodies, but none of them took into perspective the rare disease lens. So we’re actually the only ones to provide that lens for all of the policy we’ve tried to shape.”
Currently, RareGen has 374 members in 11 chapters in more than 20 countries. Joining is as simple as connecting through the organization’s social media pages or website. Or just sending him an email, Uppalapati says. Members do not have to have rare diseases to join. “We encourage a lot of allies to join as well because people with rare diseases are limited in numbers, so we need to really gain support from people who are passionate about the cause,” he says.
Expanding Advocacy
After seeing the impact that a youth-led group can have, Uppalapati launched the Chanakya Initiative in 2024. It focuses on literacy and career training, primarily for women in South Asia. It is expanding to other countries, including the United States, he says.
“What we aim to do is create workshops with the support of local governments which help enhance financial literacy skills as well as career training skills such as computer literacy. And some other STEM-related skills that can help [women] enter the workforce,” Uppalapati says. “These women that we trained were often marginalized and not allowed to leave their home, which was really extreme and disheartening to see. So with the support of local government, we were able to bring these women to the workshops, train them, teach them, support some small businesses with … grants to kick start the businesses. And right now, we have around 11 participants who successfully launched their own businesses.”
Next on his agenda is hosting a RareGen event in mid-June in Washington, D.C. “We’ll have showcases from a lot of youth with rare diseases who want to talk about their experience, community networking sessions, and rare disease literacy guides [discussing] how to spread rare disease literacy,” Uppalapati says.
When he’s not in school or working to change the world, Uppalapati says he likes to spend his free time weaving e-textiles. He learned about it while at the Massachusetts Institute of Technology’s summer research program for high schoolers. “I actually bought a loom and everything,” he says.
Feature image courtesy Khartik Uppalapati
